Given my background as a mom with two kids with this deficiency, as a well as a board certified family physician, my goal is to make lipoprotein lipase deficiency / Fredrickson's type I hyperlipidemia / Buerger-Gruetz syndrome more understandable and liveable for other families.

Monday, May 23, 2016

The Dreaded Blood Draw...

I'm not sure who dreads our biannual blood draws more, Monica or us parents. I thought it was bad to hear your baby cry as you hold her so tight, willing it to be over soon, and feeling so sorry that she is hurting, but young kids are even worse. When your child can recognize the lab, based on the waiting room and white lab coats and the chairs, and can start being scared and screaming and panicking when you just walk in the vicinity, that's the worst. Even if we talk it up beforehand with Monica, and she plans to be brave, sometimes it seems she just can't help but try to run away, which, if you ask me, is even more heart rending than a little baby's cries.

You wouldn't want to make me cry

I imagine every kid is different. I learned pretty early on that shots and blood draws only hurt for a few seconds, and even then were more of a 'pinch' than real pain, and haven't struggled with them personally. I religiously give blood, and although sometimes I turn away and don't look, and sometimes I use deep belly breathing to get through the anticipation of that poke, it's certainly not anything that gives me anxiety. My husband on the other hand feels something viscerally wrong when he gives blood, and although sometimes he can meditate his way through the experience, more often the thought of blood leaving his body makes him queasy, if not unconscious on the floor.

I certainly pray that Monica will end up being more like me than him, especially so that as an adult, she can experiment with her diet and see what effects different foods have on her triglycerides. It's a big interest of mine to discover what helps her to overcome her reaction to run when she sees that lab chair. This is what we've tried so far:

Preparation - When you check in, make it clear that you are willing to wait in order to get the best 'peds stick' on shift that day. A little anxious waiting in the waiting room is still SO much easier than multiple pokes into a little squirmy arm. For afterwards, make sure you have some snacks (fasting is hard on little bodies!), an extra fun Band-Aid or two (sometimes they run out!) (or a regular band aid and a permanent marker to draw a smiley face, ha, been there!), a sticker, a temporary tattoo, whatever will distract your kid as fast as possible afterwards. Monica hates the coban that they like to put on needle stick sites these days, so we don't even allow that to be put on her anymore. I hold the cotton ball in place until she stops bleeding, and then we require a band-aid to hide the evidence.

Gifts - We had success with a set of dolls that Monica helped pick out, and she got to choose one doll with every blood draw. She admitted that she's looking forward to her next set of labs, so that she can get the next doll in the set! Though I'm sure the doll won't be that appealing when she's actually waiting for her name to be called, oh well. You could even wrap up a present, and have the (one handed) opening of the gift be part of the distraction during the blood draw!

Is there anything more alluring, exciting, and distracting, than an unopened box?

Movies - Monica really likes to have an ipad or dvd player positioned just right, to block out what's going on to her arm in her field of vision. It doesn't have to be much of an interesting show, just anything that she can look at!

Distraction - Basically anything that we can think of for a distraction is what we are working towards. For Teresa we will wave a new toy, preferably a noisey and visually interesting one (and even better, a toy that the clinic provides so that it's brand new to her, too!), since she's too little to understand much of a movie or a wrapped gift.

Knowledge - I'm hoping that, as Monica matures, this will be the major incentive. This last blood draw was the first one where we tried to teach her WHY we check her blood every 6 months, what kind of numbers (we talk on a scale of 1 to 10, with 10 being triglycerides of 1,0000, and our goal of 500-700, or 5-7. Monica was at 5! Hurray!!) we want, and what those good numbers mean (we don't have to worry about her getting sick!). But again, not sure it will help when she's sitting in that lab chair!

Perspective - I wish I could remember how I came to realize that shots and blood draws just don't hurt that much! I mean really, falling and skinning your knee is WAY more painful than a needle stick, but I don't see kids afraid of running down the street! I've tried to allow Monica to see me get my blood drawn or get my flu shot, and show her that it doesn't hurt me enough to even make a face, let alone cry. But at this point, seeing me get hurt like that is too scary, as well. Maybe someday she'll be able to watch. Or even better, working in the medical field as I do, maybe someday I can have a colleague could show her how to give me a flu shot or something herself! And with active participation, realize #1 that it doesn't bother me much at all, and #2 how hard it is to draw blood sometimes!

Things that haven't worked:

Talking it up days beforehand - whoo, this was a mistake with such a little girl! She was anxious and unhappy for DAYS instead of just an hour. Oh well. Never again!

Candy - I'm not positive, but I think her triglycerides might have been a little higher than they should have one time when we started feeding Monica jelly beans as soon as she sat in the lab chair to distract her. Sugar hits the blood fast and is turned right into triglycerides sometimes! That's why it's important to fast to get the best numbers. So hold onto that candy until the needle is out!

What other ideas do you have? What do you do to make blood draws easier for you or your child?

Thanks Sandy! I was about to ask to hear more of your story, but I just read it on the Facebook FCS support group! I would really love to hear more about how your pregnancies went. I am so nervous about my girls growing up and wanting families of their own! And I loved your simple description of your meals: simple and repetitive. And that's OK. I have no idea what dry cottage cheese is, but I'll look into it...

I was born in 1960 and there were no 'low fat/no fat' food options like today so my mom had to be creative. The BEST thing is that I was a child and so there are a lot of things I never ate and never developed a taste for!

Dry cottage cheese was a staple in my diet and it was so crumbly that my mom would add a bit of skim milk to it so it would stay together easier to eat. She also added tomatoes to it.

They quit making dry cottage cheese in my area about 15 years ago. I really miss it. When we took a family RV trip out west in 2004 I found it in Kansas. And one of my daughters lived in Denver for a while. I found it there. It was in a bag. Not in a carton. My last trip there I bought 10 bags of it and carried on a small cooler in my flight home!I was in heaven. ❤️

I have stories about blood draws. Will you be in Chicago?I NEVER WATCH! I always turn my head and I always get a bit panicky before. And I HATE chatty stickers. Shut up and do your job!

Some of the WORST things to say:Ooh. You have bad veins. I'm not sure where I can go w this. Let me see your other arm.

And if you can hit the vein first time, DO NOT dig around in MY arm!!!! I'm doing you a favor by allowing you to take my blood. Don't mess w me!

It's taken 45 years to find my own voice but I will NOT allow anyone to draw blood if they are incompetent. They can practice on someone else. But not me. I've been through enough.

Fight for your girl!!!I'm so glad you wait for the best phlebotomist. It's worth it for her. She needs that. And I think the best way is for you to hold her, hugging her to your chest and let them take her arm while you keep holding her. Let them do whatever they need to in order to get the blood while you provide the live and comfort and support that SHE needs!!! Maybe that will help her to develop a better tolerance.

I was raised in the era of medical community is god and they were in charge and no patient had rights. My mom had to fight for me all the time at Hopkins and NIH.

For my daughter the talking and prep beforehand is key. It's true-everyone is different! We showed her a youtube video of a college nursing program showing how to draw blood. I pointed out when the needle went in, how the patient "responded"-calm- and how quick it was, how the blue band went on and then off, etc. This was our easiest blood draw to date and she is so proud of how brave she was. Lets cross our fingers for the next one!

Followers

About Me

My toddler daughter was diagnosed in 2012 and we've changed a lot about our family's lifestyle and diet to accommodate her. Now we know our little baby born in 2015 has it, too, and we've been doing crazy things to keep her drinking breastmilk! It's not easy, but it's definitely not as scary as I first thought it was when we were diagnosed! Mostly it's a relief that she doesn't have something worse, and she will be with us for years to come! My background as a residency trained family physician certainly comes in handy for talking with specialists and reading the latest gene therapy articles. I hope I can make it all more understandable and liveable for other families!
Other resources for LPLD:
http://www.lpldalliance.org/
https://www.rareconnect.org/en/community/lipoprotein-lipase-deficiency